Monday, July 20, 2009

If you are interested in new developments in autism self advocacy and awareness and want to avoid the tired "we don't want to be cured" ideology check out those who are presenting new perspectives in autism self advocacy. Jonathan Mitchell, Autism's Gadfly, and Jake Crosby at Age of Autism don't take their cues from the Neurodiversity playbook. Another vital new point of view is offered by Stephanie Lynn Keil an artist and person with an autism disorder who doesn't subscribe to the old rhetoric of Sinclair, Dawson, Baggs and Ne'eman.

In Improve Self, Not Society Stephanie refuses to focus on society as a means of addressing her challenges, choosing instead to focus on her own role in the world and what she can do for herself. She does not want to become a "career autistic" and sees a better way to deal with her challenges:

"I can't wait for society to accommodate me: I need to accommodate myself to society now. I can change myself in much less time than I can change society, which is why I am taking this route."

Stephanie's views are anathema to those who promote autism disorders as social constructs, natural variations, a different, even superior, ways of thinking. The Neurodiversity Hub is not kind to autistic persons like Jonathan Mitchell, Jake Crosby or Stephanie Lynn Keil, those who think for themselves, look to improve themselves and overcome their deficits. By their words they have proven false the implied claim by some self appointed autism disorder spokespersons that all persons with autism do not want to be cured.

I agree that you think for yourself and that you express yourself with courtesy. For both reasons I have had you listed on this blog as one of the blog sites I visit. (Although not lately as you point out nothing new for months).

You differ somewhat but not markedly on some of the most important AH issues. You posted on autism Cure as follows:

I don't want or need one for myself. Unless they could develop a way to cure the comorbids without losing the positive aspects of autism, excellent. But they haven't, and they can't.

But I'm not anti-cure, despite what I think. If an autistic person would want to be cured when/if one is available, I have no objections. But it should only be up to the autist. Nobody else. ""

Autistic children, like all children do not generally make their own medical decisions. That is the role of parents. Some autistic adults are also not competent to make their own decisions and others must make them on their behalf. Your view about "autists" making decisions for themselves is consistent with the Autism Hub/Neurodiversity perspective.

You also do not see autism as a disorder which is consistent with the AH/ND perspective.

The people listed in my comment about New Wave Autism Self Advocacy differ from the AH/ND on these issues and have been criticized, in some cases vilified, for doing so. Crosby and Mitchell have been harshly maligned by some at the AH.

It is my understanding, and I may be wrong, that Stephanie Lynn Keil, was refused posting privileges at the AH.

Although we disagree I appreciate your candor and your courtesy and look forward to more posts on your blog site.

Yes, I was refused to be listed on the Autism Hub because I wanted to have a life outside of autism; I wanted myself and society to forget and not even notice I had autism, which is bad according to AH/ND.

I don't really have any "comorbids." My problems are strictly with autism - and I can fix it and everyone could if they chose to. I'm going to make myself "indistinguishable" from my peers so that I can have a real life, a real career and not spend the rest of my life being a career autistic.

Maybe once people see that I can still be myself and be happy even though I am "indistinguishable" from my peers they will see what fools they are.

"I think that society should forget and not even notice autism is one of the principles of ND."

No it isn't. ND wants people with autism to be "integrated" into society, complete with all of their symptoms; ND wants society to "accommodate" and "support" people with autism.

The truth is that most people with autism cannot function unless they get treatment, unless they get their medical problems to as much of a non-autistic level as possible, and ND does not support that.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.